By JULIE MINDA
PHOENIX — During Lindsay Meisner's 31-week prenatal checkup in February, tests flagged serious health problems for her baby. Meisner was immediately admitted to Dignity Health St. Joseph's Hospital and Medical Center here and delivered baby Berlynn Feb. 28. Berlynn was born with an irregular heartbeat, a dilated bowel and cystic fibrosis. She underwent intestinal surgery.
She's been tube fed since birth and has been diagnosed with failure to thrive. But, in a sign she is making progress, Berlynn began taking bottled breast milk in early October. She receives nutrition through a gastric feeding tube 12 hours each night.
Lindsay Meisner holds newborn daughter Berlynn in the St. Joseph's NICU.
It's been a rough time not only for Berlynn, but also for Meisner and her fiancé Brad Jensen. The parents were an almost constant presence in Berlynn's neonatal intensive care unit room, sweating through setbacks, watching the monitors, aching for their daughter to gain weight. Through spring and early summer, Meisner and Jensen eagerly anticipated Berlynn's improvement and discharge, yet they fretted about leaving the protective cocoon of the NICU, with its around-the-clock medical staff.
Upon Berlynn's Aug. 11 discharge to home, Meisner and Jensen became the baby's primary medical team. They give her breathing treatments using an inhaler during the day and a nebulizer at night. The parents perform manual chest physical therapy every morning and night — percussing her back to drain mucus from her lungs. They administer medications or vitamins every several hours around the clock.
Meisner, 35, said she and her partner feel comfortable delivering this level of care in large part because of Smooth Way Home, a Dignity Health-backed program that prepares NICU families for their transition home. Meisner said St. Joseph's and Smooth Way Home "ensured we knew the machines, helped us set up all the prescriptions we needed. And, I can call them with questions."
From left, Travis and Carter McLaughlin visit brother Brayden the day after his Dec. 25, 2015, birth at HonorHealth Scottsdale Shea Medical Center. Brayden was in the NICU for eating and respiratory issues. During discharge planning, Smooth Way Home helped the McLaughlins connect to community resources.
Navigators and other staff with the collaborative program meet with parents pre- and post-discharge, help them develop goals and a plan for their baby's home care and connect them with resources. Smooth Way Home representatives make home visits to families with acute post-discharge needs and are available for questions and advice. The home visits last until the child is 8 months past his or her due date, irrespective of the birth date. All other services have no age cutoff.
Parents can consult the program's 169-page manual to learn more about emergency preparedness, medical supplies, developmental milestones, health care management, insurance and finances, aid programs, and community resources and support groups.
Common challenges for the families include coordinating follow-up care, successfully feeding a premature or sick baby and dealing with family conflict related to off-the-charts stress levels.
Berlynn Meisner passes the 100-day milestone in the neonatal intensive care unit at Dignity Health St. Joseph's Hospital and Medical Center in Phoenix. She spent 23 and a half weeks in the NICU before going home Aug. 11.
Collective impact
Smooth Way Home began around 2011, when Marisue Garganta, who directs community health integration and community benefit for St. Joseph's, stepped in to advise several local nonprofits that had been providing services to NICU families for several years. She helped them to form a tighter alliance and provide more coordinated services for families caring for sick babies.
Phoenix nonprofits at the table included Southwest Human Development, Raising Special Kids, Feeding Matters and Arizona Postpartum Wellness Coalition.
Garganta helped the group to secure Dignity Health grants totaling nearly $260,000 between 2011 and 2015 to formalize their structure and to launch their services. Grants from other donors also have funded the work.
Southwest Human Development houses Smooth Way Home and provides two program managers, two part-time home visitors and administrative and director-level support. And, each of the partner organizations provides their time, expertise and staff to train clinicians and support families.
Around 2011, St. Joseph's NICU clinicians began working hand-in-hand with representatives from the partner nonprofits, helping them better understand and integrate into the hospital setting. Smooth Way Home collaborates directly with the NICU's interdisciplinary team that includes nurses and social workers, to ensure a successful discharge.
Rachael Cervantes is a program manager for Smooth Way Home. She is employed by Southwest Human Development, which provides multiple intervention programs for early childhood development. She said of families taking their babies home from the NICU, "It's such a stressful thing — while in the hospital, you have nurses, doctors and social workers all around you. And, then you're asked to fend for yourself when you go home."
Smooth Way Home is training hospital staff to better communicate with parents to prepare them for direct caregiving. (See sidebar.)
And it's connecting families to community-based resources.
Brayden McLaughlin at three days old in the NICU at HonorHealth Scottsdale Shea Medical Center.
High stakes
Information from Smooth Way Home indicates that NICU babies — including those suffering from extreme prematurity, very low birth weight, failure to thrive, substance exposure and a wide range of medical conditions — are at risk for potentially lifelong developmental problems; frequent hospital readmissions; and shaken baby syndrome, a form of child abuse that can cause permanent brain damage or death.
Marla Wood, a trainer and developmental coordinator for St. Joseph's NICU, and a program champion at the hospital, noted that early intervention can prevent or lessen future health issues. Interventions can include developmental, behavioral and medical therapies. Wood said supporting the family also can decrease the risk of incidents of abuse and neglect.
Trauma state
Smooth Way Home's navigators and manual emphasize the mental health needs of families with fragile babies.
According to information from Smooth Way Home, dealing with the stress of a sick infant can strain every family member. Mothers can feel overwhelmed physically and emotionally. Garganta said, "There is a high incidence of postpartum depression." Fathers can experience high anxiety about their baby's health and their ability to meet ongoing costs of care. Siblings can feel confusion, anger, anxiety and fear about the baby's well-being.
Garganta said, "Their lives have been totally turned upside down. Families have been torn apart by the stress."
Even before babies are discharged, Smooth Way Home helps the families understand the relational and mental health challenges they're likely to face and ways to address them, including with counseling, support groups offered by Smooth Way Home partners and through self-help strategies.
Roxanna Chavez, a fragile infant specialist with Smooth Way Home, said underlying all of the organization's interventions is the goal of ending the isolation felt by many families with a sick baby. "They have someone to talk to, someone to call. It's helpful to know support is here."
Meisner, whose daughter now is improving and slowly gaining weight, said the support "has been huge. Otherwise, we wouldn't have even known where to start" to transition home.
Smooth Way Home trains NICU clinicians to better assist families preparing to take their baby home Neonatal intensive care unit clinicians are experts when it comes to providing acute medical care to sick, fragile newborns. But they aren't always as adept at explaining in laymen's terms to anxious parents, their sick baby's medical issues and the treatments that the parent might be required to administer at home, according to Moniki Pogue, a clinical manager in the NICU of Dignity Health St. Joseph's Hospital and Medical Center. Not every parent can absorb all the instructions, she said, and, when it comes to the medical terms and treatments discussed, "it's a foreign language to them." Smooth Way Home helps to address this gap by training the NICU staff at in-services and conferences at St. Joseph's and other Arizona hospitals. Topics have included oral feeding for fragile newborns and postpartum depression signs, symptoms, resources and treatments.
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